Epilepsy patients could lose services under Scott proposal

Although state lawmakers have more cash for the state budget this year, some programs could still come up short in the annual scrimmage over funding. And the outcome may make a difference in the lives of some of Florida’s most vulnerable residents.

For instance, $7.5 million in funding for 5,700 Floridians who suffer from epilepsy could be at risk. In his $74.2 billion budget plan, Gov. Rick Scott recommended eliminating the entire amount. He said the state funding was “duplicative” and that the services could be provided by others.

As the House and Senate begin shaping their initial budget plans, advocates for the epilepsy groups will be trying to save that funding. Their argument is that eliminating the state support could disrupt — if not damage — the lives of people with epilepsy and could cost taxpayers substantially more in the end.

Even with a larger budget this year, epilepsy funding is one of several health care programs that could be targeted for cuts.

In his budget plan, Scott targeted more than a half-dozen programs in the Department of Health, including:
• $715,000 for University of Florida dental clinics that serve some 4,000 Floridians.
• $345,000 in funding for a program related to a rare genetic disorder called “alpha 1-antitrypsin deficiency” that causes lung disease in adults and liver disease in children. It affects 1,500 Floridians.
• $213,000 for a contract with the Diabetes Research Institute Foundation for staff to followup with patients who had islet cell transplantation. Some 23 Floridians were involved in the clinical trials.

Like the epilepsy funding, it will ultimately be up to lawmakers to decide whether to go along with Scott’s recommendations or to continue funding the programs.

Art Jackman, president of Epilepsy Services of Southwest Florida in Sarasota, said eliminating the funding would have a “devastating impact” on the 630 clients who use the services in the eight-county region served by the program, which includes Sarasota, Manatee and Charlotte counties.

Epilepsy is widespread.

Nationally, one of out every 10 Americans is expected to have a seizure by the age of 75. In Florida, there are an estimated 375,000 people with epilepsy, including 84,000 children.

Epilepsy Services of Southwest Florida is part of a statewide network of nonprofit groups — Florida Epilepsy Service Providers (FESP) — that treat Floridians who have little or no insurance or have not been able to get coverage or treatment through Medicaid, the federal-state health care program for the poor.

“We’re an agency of last resort for people who don’t have any other options,” Jackman said. “They don’t have insurance. They come to us.”

In making his budget recommendation to lawmakers, Scott said the funding for the epilepsy groups could be eliminated because they are providing “services that are currently available from other providers.”

The governor cited 52 federally qualified health services, health-care taxing districts and social service providers like the United Way or “various health care foundations and other public and private sources.”

But Jackman said that is largely not true and that many of those groups refer epilepsy clients to his group and other similar providers around the state.

Jackman said the reality is that if the funding is ended many of those now being served by the network will end up without regular treatment and anti-epilepsy medication and need more costly emergency rooms or hospital beds.

“If the services are stopped the only option would be for them to go to the emergency room, which costs the taxpayers a lot of money,” Jackman said.

He also said emergency room treatment is only temporary.

“They stabilize the seizures but they don’t provide ongoing treatment even though epilepsy is an ongoing disorder,” Jackman said.

There is a substantial difference in the cost of the treatment.

Prior to becoming a client in the FESP network, the epilepsy sufferers averaged 2.5 seizure-related emergency room visits per year at a cost of $13,750 — or $5,500 per visit, according to the advocates.

The groups in the network say that on average their services cost $851 per client per year, including treatment and drugs.

“The successful public-private partnership of FESP (network) and the state of Florida has taken limited resources and made a dramatic impact in the lives of those with epilepsy,” Jackman said.

State Sen. Denise Grimsley, R-Sebring, and state Rep. Matt Hudson, R-Naples, who oversee the health care budgets in their chambers, have not finalized their initial budget bills yet, although they said they are open to argument that the existing network should retain its funding.

Hudson, chairman of the Health Care Appropriations Subcommittee, said in his budget hearings he asked the governor’s aides for a more detailed answer on how the existing epilepsy groups were providing “duplicated” services but has yet to receive a “concrete answer.”

“It concerns me and I have no great desire to run the risk of making sure that people who need their very important medications don’t get them,” Hudson said.

He also said lawmakers would make the ultimate decision on whether the program retains its funding.

Rep. Mike Fasano, R-New Port Richey, a member of the House budget subcommittee on health care spending, said he said he would like to see a permanent commitment to the program.

“My hope is that one day we can get it in there as recurring dollars so that these epilepsy foundations don’t have to fight this every year,” he said. “They’ve been getting funding for the last 30 years.”

Lloyd Dunkelberger

Lloyd Dunkelberger is the Htpolitics.com Capital Bureau Chief.
He can be reached by email or call 850 556-3542.
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Last modified: March 23, 2013
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